Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Do you react to "gluten free" as in less than 20 mg/kg?

Lex-

Recommended Posts

Lex- Explorer
Lex-
Posted

I am new to the gluten free world, and still learning. I have kept a food diary, avoided gluten religiously, and yet had a reaction without knowing the source - until I l realised the tuna fish I was using under the guise of "gluten free" actually contained a little gluten (<20 mg/kg). Could this have been the culprit? Any thoughts? 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted
57 minutes ago, Lex_ said:

I am new to the gluten free world, and still learning. I have kept a food diary, avoided gluten religiously, and yet had a reaction without knowing the source - until I l realised the tuna fish I was using under the guise of "gluten free" actually contained a little gluten (<20 mg/kg). Could this have been the culprit? Any thoughts? 

Just curious- how do you know it had Gluten?  And the measurements seem odd to me.  In the US we measure Gluten in parts Per Millon (ppm)

Lex- Explorer
Lex-
Posted
  • Author
13 minutes ago, kareng said:

Just curious- how do you know it had Gluten?  And the measurements seem odd to me.  In the US we measure Gluten in parts Per Millon (ppm)

I looked up the product on their website. And milligram per kilogram is the equivalent way of saying parts per million. They are the same.

Victoria1234 Experienced
Victoria1234
Posted
1 hour ago, Lex_ said:

I am new to the gluten free world, and still learning. I have kept a food diary, avoided gluten religiously, and yet had a reaction without knowing the source - until I l realised the tuna fish I was using under the guise of "gluten free" actually contained a little gluten (<20 mg/kg). Could this have been the culprit? Any thoughts? 

I used to. Not anymore, though. But for the first, I don't know, say 2 years I couldn't have the gluten-free cookies, breads, etc at all without starting to itch (dh).

Lex- Explorer
Lex-
Posted
  • Author
9 minutes ago, Victoria1234 said:

I used to. Not anymore, though. But for the first, I don't know, say 2 years I couldn't have the gluten-free cookies, breads, etc at all without starting to itch (dh).

Ah yes, my immediate symptom is the itching too.

kareng Grand Master
kareng
Posted
20 minutes ago, Lex_ said:

I looked up the product on their website. And milligram per kilogram is the equivalent way of saying parts per million. They are the same.

 So....it says they test at less than 20 per million?  What I want to know is how do you know that number isn't 0?  That doesn't mean the item has 19 ppm of gluten...or that's they add gluten until it reaches 19.

Ennis-TX Grand Master
Ennis-TX
Posted

I reacted to "Gluten Free" hemp protein....I ate it for a few weeks til I started having symptoms ramp up and sent it off to be tested after my Nima Gluten tester flagged it for positive....came back like I think they said 16ppm.....took awhile but I did have a reaction....been 4 weeks off the stuff and still coming down, so many other issues came back and D just stopped daily after 3 weeks....still got a random cow pie this morning but I tried to reintroduce Mexican spices too soon it seems and my gut is still picky.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

It might not be gluten in canned tuna hat is causing your issues.    You could be reacting to other ingredients like soy.  

Lex- Explorer
Lex-
Posted
  • Author
2 hours ago, cyclinglady said:

It might not be gluten in canned tuna hat is causing your issues.    You could be reacting to other ingredients like soy.  

It could be something else, of course, but I have not reacted to soy before. As far as I can tell, soy agrees with me.

ravenwoodglass Mentor
ravenwoodglass
Posted

Unfortunately our reactions can be delayed by up to 3 or 4 days. That can make it hard to figure out what got us. In addition after we have been gluten free for a bit other intolerances can rear their ugly head. I thought I was reacting to gluten in items that were not only gluten free but made in dedicated facitities. In my case it did turn out to be soy but it took me awhile to figure that out. Was the tuna plain tuna? If so what did you have with the tuna?  I have only been able to find one or two tunas without soy. I have to read the full labels because even many that say 'packed in water' are actually packed in a water based broth with soy. I hope you can figure out what got you soon. One last note. Do you have DH? If so even the low levels of iodine in the tuna may be too much for you till the antibodies leave the skin.

Ennis-TX Grand Master
Ennis-TX
Posted

I also developed a intolerance to olive oil at one point....came back recently...... anyway check this article out on intolerance and other issues. You can get rolling intolerance issues with this disease where something will just up and start bothering you one day and maybe go away in a few weeks or months. Open Original Shared Link

Lex- Explorer
Lex-
Posted
  • Author
19 hours ago, kareng said:

 So....it says they test at less than 20 per million?  What I want to know is how do you know that number isn't 0?  That doesn't mean the item has 19 ppm of gluten...or that's they add gluten until it reaches 19.

I am aware what "less than 20" means. It could be zero or 19.99999. Can you be certain it's zero?

Lex- Explorer
Lex-
Posted
  • Author
8 hours ago, ravenwoodglass said:

Unfortunately our reactions can be delayed by up to 3 or 4 days. That can make it hard to figure out what got us. In addition after we have been gluten free for a bit other intolerances can rear their ugly head. I thought I was reacting to gluten in items that were not only gluten free but made in dedicated facitities. In my case it did turn out to be soy but it took me awhile to figure that out. Was the tuna plain tuna? If so what did you have with the tuna?  I have only been able to find one or two tunas without soy. I have to read the full labels because even many that say 'packed in water' are actually packed in a water based broth with soy. I hope you can figure out what got you soon. One last note. Do you have DH? If so even the low levels of iodine in the tuna may be too much for you till the antibodies leave the skin.

Thanks for your response, ravenwoodglass,

 

I do have DH. Apparently DH is my most immediate symptom, setting in before the rest of the symptoms appear. The tuna I consumed is not plain. It's packed in olive oil and garlic. Is iodine something I should worry about too? If so, does it include iodine added to salt as well?

Lex- Explorer
Lex-
Posted
  • Author
8 hours ago, Ennis_TX said:

I also developed a intolerance to olive oil at one point....came back recently...... anyway check this article out on intolerance and other issues. You can get rolling intolerance issues with this disease where something will just up and start bothering you one day and maybe go away in a few weeks or months. Open Original Shared Link

Thank you for the response and the link, Ennis_TX.

 

It seems I have an arduous journey ahead of me.

ravenwoodglass Mentor
ravenwoodglass
Posted
1 hour ago, Lex_ said:

Thanks for your response, ravenwoodglass,

 

I do have DH. Apparently DH is my most immediate symptom, setting in before the rest of the symptoms appear. The tuna I consumed is not plain. It's packed in olive oil and garlic. Is iodine something I should worry about too? If so, does it include iodine added to salt as well?

Iodine can keep the antibodies active in the skin.  I just had to drop iodized salt and got vitamins without iodine. Some need to avoid high iodine foods like seaweed and some seafood as well.  It is important to add iodine back in after you haven't had any new breakout for a couple months or so. I also made sure any topicals like shampoos, soaps etc were gluten free. Gluten can't be absorbed into the bloodstream through intact skin but skin with DH lesions is not intact. I felt better safe than sorry as DH is sooooo very miserable with which to deal. I hope you heal quickly. 

jfhinoh Rookie
jfhinoh
Posted
On 1/2/2018 at 5:18 AM, Ennis_TX said:

I also developed a intolerance to olive oil at one point....came back recently...... anyway check this article out on intolerance and other issues. You can get rolling intolerance issues with this disease where something will just up and start bothering you one day and maybe go away in a few weeks or months. Open Original Shared Link

 

On 1/2/2018 at 1:41 PM, Lex_ said:

Thanks for your response, ravenwoodglass,

 

I do have DH. Apparently DH is my most immediate symptom, setting in before the rest of the symptoms appear. The tuna I consumed is not plain. It's packed in olive oil and garlic. Is iodine something I should worry about too? If so, does it include iodine added to salt as well?

A lot of the olive oil sold in the United States is diluted with less expensive oils or other ingredients.  It may not actually be a reaction to olive oil, but to one of the other questionable ingredients. 

60 Minutes did a story on this awhile ago: Open Original Shared Link

 

Ennis-TX Grand Master
Ennis-TX
Posted
3 hours ago, jfhinoh said:

 

A lot of the olive oil sold in the United States is diluted with less expensive oils or other ingredients.  It may not actually be a reaction to olive oil, but to one of the other questionable ingredients. 

60 Minutes did a story on this awhile ago: Open Original Shared Link

 

Well if they cut it with sunflower it would have some effect on me but I have to eat a decent amount to trigger a reaction. Peanuts are the only other thing that can make me projectile vomit as bad as olives currently do again. But I doubt they would risk that allergy. Though you point does bring out a interesting facts...there is one product that contains olive oil in it way down on the ingredients I had just this morning and it did not bother me. -_- The pasta sauce I had 2 days ago with only a tbsp over my eggs had me praying to the porcelain god for a good half hour. Back to making my own, or using miracle noodle pasta sauce (they use coconut instead of olive). -_- I miss that for awhile I was able to have Thrive Market Marinara sauce in small amounts til the intolerance came back.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    4. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    5. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.